Forum Replies Created

Viewing 15 posts - 1 through 15 (of 28 total)
  • Author
    Posts
  • Corinne
    Participant
    Post count: 35

    I had RAI just over 3 months ago now I think….so still pretty fresh out of it. That is good that you weren’t very symptomatic. The symptoms are vast and really a pain. After being hypo for a month now, being tired sucks, and I get really ache-y but I would take this over how I was feeling any day! (Especially because I’m optimistic that its just going to keep getting better)

    I also definitely had the over eating issues when I was hyper!! My appetite was ridiculous! Ugh. I have been with my husband since we were 14 and I have ALWAYS gotten crap from him about constantly being able to eat more than him…and then being hungry again moments later!! Lately I haven’t had an appetite though. It could be because I’m still so Hypo….I don’t know. I still think a diary would be good to do… I might start trying that. I have a sweet tooth.

    Hope you are feeling well, and good luck with your decision! And, try not to think too much about the baby thing. I have been talking to women who are having problems getting pregnant and they say worrying about it doesn’t help! Try to do what is best for your body now, because ultimately it will be better for a pregnancy….even if it means waiting longer. Thats what I keep telling myself. It will happen when its supposed to, and my body will probably be determining that….

    Corinne
    Participant
    Post count: 35

    Hi,
    I am in a similar situation as you. I am 25, and was dx in December. In all reality I know I have been sick for a really long time, in fact in high school I started getting some palpitations, "over"-perspiring (which I remember being sooooo embarrassed about) and weight loss. Through college I couldn’t gain any weight….and was totally happy about that of course. But after college, when I started graduate school (3 years ago now) I started gaining weight and experiencing fatigue…and I think this is where I started getting really ill, probably brought on by huge amounts of stress. I really think I lost so much muscle from graves and my metabolism slowed as a result and then suddenly I was so sick I called into work 2-3 days out of the week and could barely get out of bed. Finally I went to the doctor and was dx. I waited about 5 months to have RAI….and I wish I wouldn’t have. The ATD’s never made me feel 100% better. I also want to start trying to have kids in around a year, and at this point I know its going to take me a while to get to normal levels, and then after that probably at LEAST as long to heal, because I feel like my poor body is just freaking out. But anyways, about the weight. As I said I ended up gaining a lot of weight (well like 20lbs) compared to my "usual" weight (or at least what I feel like is ideal for me) while I was still hyper and really very ill. But since my RAI I am starting to feel a lot better, but am still VERY hypo. For about 1.5 months my TSH has been in the high 30s. Which, some people would think should be causing me to gain a lot of weight. Since RAI it has been about 3 lbs. I just increased my dosage after my last appt (I start my new dosage tomorrow finally). I won’t lie, even though I haven’t gained much according to the scale, I feel like I have and its a tad uncomfortable. But, most people say I don’t look like I have gained weight (trying to be nice?!?). But, all I am trying to tell you is (even though I probably got way off topic) don’t let the weight gain worry you. Even if there is significant weight gain….its not healthy to be in this condition! If the PTU isn’t getting you in a healthier position….the RAI IS worth it. I haven’t experienced what I would consider horrible weight gain, I still look thin. And even with the small gain I feel SOOOO much better already. Soon I will be able to start working out again and hopefully look and feel great in the near future. Then after that I can start having kids. It really doesn’t seem like it now, with how "fat" and "cruddy" I feel now that I will ever be able to feel active and fit and healthy again….but I have seen glimpses….and am sure I and we will get there!
    -Corinne

    Corinne
    Participant
    Post count: 35
    in reply to: ANA #1064932

    Hi,
    Before my grave’s diagnosis, they ran an ANA test on me. They told me it was to see if I had Lupus. Maybe thats not all it tests for, I don’t know but thats what they told me! I am surprised they didn’t tell you why they ran the test! Hope you get some answers soon.
    -Corinne

    Corinne
    Participant
    Post count: 35

    Hi,
    Maybe this isn’t totally relevant, because I am only 24, but when I was very ill (Hyper), my periods stopped completely. That ended up being about 6 months. Before then I had periods that lasted like one hour for maybe 5 months before that. So all together don’t remember the last time I really had a normal period. Then, I did RAI and for the couple months I was closest to "euthyroid" I had ever been and felt great, I started getting a period again, not totally normal, but I thought they were going to come back for good. When I crashed into Hypo I skipped again, and that is where I am now. I have done regular pregnancy tests, just in case, and they are always negative. My doctor says this isn’t totally unheard of (she didn’t say it was common, but rather just that it could happen). So, maybe what your doctor said was menopause, really was just due to you being hyper….and now as you normalize it will be coming back. I have my fingers crossed that mine will come back so I don’t have to worry about not being able to have kids!
    -Corinne

    Corinne
    Participant
    Post count: 35

    Hi,
    I also recently had RAI, about 8wks ago now. I am not much older than your daugther, by the sounds of things. I am 24. I highly recommend the RAI. I had 5 days off of work after RAI, and was told to avoid extended contact with people, so not sleeping in the same bed or riding in the same car for hours, but I could sit and watch movies with my husband all day (and thats what we did). He just sat on the other sofa as me. So, she doesn’t have to be completely away from friends and family (with some exceptions, pregnant women, children, etc). Of course if your doctors recommend otherwise, then listen, but mine said that what I did was fine (5ft was my approximate distance from others…really thats not so far). Especially if thats the only reason she is feeling unsure of RAI, tell her its totally bearable. I had no side effects, and for me I felt better quickly. WIthin like 4-5 wks I started feeling more motivated and had more energy and my jitteryness went down drastically. By 8 wks (just posted about this!) I was hypo and now just started my replacement! I think thats rather fast, I know surgery is faster, but compared to how long I have felt crappy 8wks feels like a handful of days. I was too scared to do the surgery, much more invasive (not that the doctor gave me that option) so I can understand your worries about that as her mom. Plus, whichever you choose it will take time to find a good-for-you replacement hormone dose, so they are equal in that aspect. I hope you guys reach a decision you feel comfortable with, and soon, so that she can feel certain she is on her way to feeling much better!
    -Corinne

    Corinne
    Participant
    Post count: 35

    Do you know of any chewable vitamins that do not contain iodine?! I am having a hard time finding some. I can’t take the swallowable ones, they make me really really sick. I just noticed the other day the ones I am taking do have iodine in them, and was wondering if i should switch….

    Corinne
    Participant
    Post count: 35

    Hi,
    I haven’t checked with anyone other than my endo yet. They go away pretty fast then come back. But a dermatologist would be a good next step, I will see about getting a referral.

    I also made the mistake of googling eye-lid blisters and maybe should mention they are NOTHING like the images I see there. They are barely even noticeable unless I point them up and stand right in front of the mirror. So, minor. But they do make my eyes itch a bit so thought I would ask. I will let you know if I find anything out.
    -Corinne

    Corinne
    Participant
    Post count: 35

    I just had my RAI a week ago. I was on methimazole and it really didn’t help all my symptoms, and I found myself wanting a more "permanent" treatment, and hopefully one that truly made me feel 100% better. So, I decided to do RAI. So far, I really don’t feel any different! I didn’t have any side effects in the first week. I felt really tired…but my friends/family think that may be more due to the fact that i was a bit stressed out about the RAI, and once it was over my body relaxed. I am not used to sleeping more than 7 hours, but I would sleep for like 11 during the 5 days I had taken off work to avoid close contact. And my neck/throat was a bit sore…but both were really manageable…. So, so far no side effects! As of right now, I am happy I did it. I feel optimistic. We will see when I start going hypo how I feel. I am getting over the fact that this really is PERMANENT….there is no going back and growing a new thyroid. That concerned me a bit…..the loss of my thyroid! But now that im on my way there, its really not so scary. And its worth it to feel better….it’s even scarier to not remember who you were before your Graves! The "real me" (who had energy and motivation and was really happy) seemed like an abstract thought the past year when I have been struggling, but now I feel "me" coming back.

    But, I made my decision (with the advice of people on this board actually) because I really wanted to feel myself again and the pills just weren’t cutting it. There were other people on this board who mentioned this same feeling. So, I felt for me RAI was the next step. I almost wish I would have done it earlier. Good luck in making your decision! It is a really personal choice. But, as Grave’s patients we are actually really lucky….because we have options in treatment and all of them really have good outcomes!
    -Corinne

    Corinne
    Participant
    Post count: 35

    I was also looking into it. They are having a medical trial at Mayo Clinic in Rochester MN. But, I don’t have severe TED (but I just had RAI, so thought maybe I would qualify because of the "RAI increases the likelihood of TED" study…) so I didn’t qualify. But I was looking on the NIH websites and looked at the actual approvals for this trial, and this drug has been used for many different treatments including lymphomas/leukemias and lupus. It had a lot of side effects that scared me, but it seemed many of the severe risks were for the cancer treatments. But definitely a lot to think about! Will be interesting to see what the outcome is…

    Corinne
    Participant
    Post count: 35
    in reply to: ATDs #1065736

    Thanks for your quick response. I feel like I am going to feel like that as well. I have always thought from the beginning that I wanted RAI, but it took a while to get an endo appt, then I had a lot going on with grad school and stuff so I held off. Now I think it would be best…but I still have some fear you know what I mean. I don’t want worsened eye problems (even though I know its rare….etc), everything still just scares me. Im on a bit of a high today though, because I just finished my last hard core grad school retirement for the year, so now I feel I can focus on my getting better again….or really finally focus on getting better.

    Also wanted to note I meant heat SENSITIVITY/intolerance not insensitivity.

    Corinne
    Participant
    Post count: 35

    Oh yea, and how about looking at computer screens all day?! Have you noticed a difference between how your eyes feel if you do or don’t look (quite intentely) at computer screens?

    Corinne
    Participant
    Post count: 35

    Thanks for the info guys. I think I will have to talk to my doctor at my next visit and ask for a recommendation for an opthamologist. The pain behind my eyes actually feels like its increasing, so maybe I should look into the sinus infection thing. My eyelids hurt a little bit when I rub my eyes too. But, I think I need to talk to someone about it, so thanks guys!

    Corinne
    Participant
    Post count: 35

    So, I don’t really know exactly how Graves and ATDs and related things affect your metabolism but here is a general explanation of metabolism:

    "burning calories" is literally your body taking sugars, carbohydrates, and other compounds from your food and using them to produce energy your body can use to function. "Energy" to the body is actually a MOLECULE that is required for the majority of chemical reactions that take place in our body. Many processes require this energy thats made, but for example muscle happens to have a really high energy consumption. So say you eat something, and you want to run, your body will take sugar from your food and make it into energy, the movement of your muscles is enough to use up some of that energy so the sugar you ate is now gone, or "burned" up by the muscle’s activity. But, if you ate a really big meal there may be some sugar left over. So if your body doesn’t need it right now it will, instead of making it into energy, store it in a different form for later use. So the more muscle mass you have, the more energy your muscles will require for activity, and there will be less left over that needs to be stored for future use. Metabolism is kind of your body’s "balance" between energy being used and energy being stored for later. The more energy you use up initially, the faster your metabolism is. The more energy you store for future use, the slower your metabolism is. One way your body stores energy for later use is in fat. So a slower metabolism can mean a person would have a harder time losing weight. The amount of energy your body uses is not the only thing that regulates metabolism though (of course because the body is so complicated there are so many different things controlling every aspect of life!). There is also hormonal control of metabolism, which is different for each person, and this is how Grave’s can enter the equation. When you are hyper, we can lose muscle mass due to muscle wasting, which can slow our metabolism. Even if we are losing weight because our muscle is disappearing, our body is not using energy that we are getting from our food, so this is why it can affect people differently weight-wise. I lost no weight with my Grave’s, instead I have steadily gained weight, even when I was consistently working out before my diagnosis. But, when we go hypo, through hormonal "communication" our body can tell us to consume less energy, and actually slow our metabolism too. I think, just from what I have read about them, ATD’s since their goal is to inhibit our thyroid function, make our bodies mimic a hypothyroid state, so our metabolism may slow when we take them as well, which is one cause of the weight gain from ATD’s.

    I hope that maybe explained a little bit about our body’s metabolism. Maybe it was just more confusing. I have thought about this a lot lately, because my weight gain I think was one of the reasons my doctors were confused and didn’t think to check for Grave’s right away. I am definitely responding to the ATD’s differently than the majority of Grave’s patients too. My doctor described my weight on my first 3mo of methimazole as "rock steady". The number might be the same from week to week, but man does it feel like my pants are getting smaller! Its so frustrating.

    But like I said this is just a general overview of metabolism, because there is so much more to it….because the body is amazing and sooo many things are happening in our body that we don’t even need to think about….they just happen! So cool. <img decoding=” title=”Wink” /> I have always just been awed by biology, so excuse my corny-ness about the body!

    Corinne
    Participant
    Post count: 35
    in reply to: Newby #1066368

    Lissa-
    I have definitely had the hot and sweaty-ness before I was taking medication, and when I forget to take my medication, etc I get hot. But, the sore throats I do not have. As Kimberly said you should definitely talk to you Dr about this symptom, as it is a rare side effect of the ATD’s to decrease your white blood cell count….resulting in sore throats/flu like symptoms so call right away so they can do some additional blood work and make sure everything is ok. I have heard of people getting sore throats after radioiodone treatment, but I dont think thats usually with low doses that you get when you get the scan, and I think it goes away pretty quickly (it didn’t happen to me though).

    Kimberly- That is interesting to know that more people then I think have actually gained weight with GD. It has been really frustrating and the doctors look at me confused when I say I have definitely gained weight. It was like the opposite for me when I was still working out I was gaining weight (not just muscle because I could feel myself getting bigger, and not just the number on the scale) even when I was eating less than my normal amount of food and sweets. Now with ATD’s I still feel like I am gaining weight slowly, all in the tummy area. Its really frustrating. I think my body is still adjusting to the new medications (I have skipped 2 periods….did this happen to anyone- 3 tests told me Im not pregnant? It makes me think my body is freaking out a bit) But after I feel like Im adjusted I do plan to start a light workout regime (with help from my doctor) and diet. I can’t wait to get started, and to start feeling better.

    Also, I was curious, after you decide you want to do RAI, and if I have been on the ATDS for just over a month now, is there a reason to have to wait 8 wks prior to doing the RAI? My doctor said make an appt for 8wks from now. I am anxious and I want to do it sooner. I was wondering if there was a reason to do this, like if I have to be stable for RAI, or is it just because she is busy and that was the first available appt with her?

    Corinne
    Participant
    Post count: 35

    So, basically the Pill is definitely one of those medications I should take at a separate time as my ATDs, and once I am one them, my replacement hormones, right?

Viewing 15 posts - 1 through 15 (of 28 total)